Forward thinking GP advised I check out this site

Hypothyroid 24 years with no problem on 175mcgs Thyroxine..approx 6 weeks ago TSH 180 & 100 on same day now TSH 77..GP looked up this site at my last appointment as he said he doesn't have all the answers for TSH suddenly going off with awful side effects and he advised to check this site out as members may have more answers and solutions than he does. Just felt important to say that there are still good doc's out there☺

20 Replies

  • That's great but what has he done about your medication? Clemmie

  • With a TSH that high he should be checking your fT4 and fT3 levels! And if they are ok, then suspect an issue with your pituitary (this would need a scan)! He shouldn't just leave you to it!

  • With TSH levels like this you should feel very poorly. If you are taking your T4 daily, there should not be this level of TSH. It might be that the TSH test itself is compromised by you having developed antibodies that interfere with this particular test method directly, giving spurious results. Try to get the TSH done by another method.

  • thyroidfairy The person who replied to you above, diogenes, is, in real life, Dr John Midgley, who is one of the Thyroid UK advisors, so don't ignore it. Read about him on this page :

    If Dr Midgley has said you should get your TSH measured by a different method your doctor shouldn't ignore it either. Print out the information he, diogenes, has given you, and also print out the info about Dr Midgley on the link I gave you and take them to your doctor.

  • diogenes humanbean many thanks for taking the time to read and reply to my post. I will take both of your advice and go forewarned to my gp.

  • diogenes thank you for taking the time to read my post and comment. I have been hypothyroid for 24 uneventful years on 175mcg thyroxine & set routine take pills in am prior to shower etc I am desperate to find the answer why two blood samples taking on the same day showed TSH 180 from gp then number of hours later TSH from hospital of 100. Within 6weeks TSH of 180, 100 & 77 I actually feel worse as weeks have gone on with GP keen I should return to work when getting the energy to shower daily is huge. Can you advise what you mean by TSH done by a different method? As I said although hypothyroid 24years been blissfully uneventful so my knowledge of thyroid tests etc non existent up to now

  • Perhaps you could do it privately somewhere.

  • On the one hand, great. On the other, he seems to have left you high and dry.

    Well, take advantage and go back with a comprehensive list of tests you need courtesy of advice from non-medical people.

  • Was your TSH really 180 etc or 1.80? Possibly you misread it? If it is 180 you must be quite ill? If so they should check your fT3, fT4 also.

  • jimh111 100% no mistake I have the printout with the thyroid readings,routine thyroid blood check 6weeks ago at gp TSH 180 came home fell head injury into hosp & TSH 100 hours apart on same day huge discrepancy no one can explain, I had been feeling a bit tired leading up to annual thyroid check, thyroxine increased to 225mcg s & 4weeks ago TSH 77 gets rechecked next Fri...feel worse over the last 6weeks which is crazy as TSH much improved at 77..

  • Well done. What a compliment for HU It would be wonderful if all of the GPs were like yours and tried to find alternative information if they are stumped.

    It is how we 'feel' on a dose of levothyroxine (or any other thyroid hormones we may take) that gives us an indication that all is well, or not well.

    Your GP should do a Full Thyroid Function Test - i.e as well as the TSH, T4, T3, Free T4 and Free T3 and thyroid antibodies. Vitamin D, Vitamin B12, iron, ferritin and folate.

    The test should be done at the very earliest, and fasting although you can drink water. You should also leave a gap of 24 hours between the last dose of levo and the blood test and take it afterwards.

    Get a print-out with the ranges and post on a new question. With a high TSH like that it does need a full TFT.

  • They will need to get your TSH down but take note of diogenes earlier comment about the assay. You will need to see an endocrinologist for this. They should have checked your fT3, fT4 to see if these are consistent with your TSH. Also do you take your levothyroxine on an empty stomach? There could be a reason for poor absorption if your fT3 and particularly fT4 are low.

  • jimh111 I saw endo for first time of being hypothyroid for 24 uneventful years. he totally focused on discrepancy of my two TSH readings of 180 then 100 hours later he couldn't understand it which was disappointing as I went to him hoping for answers said I was on right increased thyroxine dose of 225mcgs & gp would see me & he's see me in six months..I came out of consultation & could have wept! Yip I take my thyroxine every morning before I shower it's automatic routine of my day & don't eat til good 3 hours later, will ask T3 & T4 on Friday as due blood test to everything crossed TSH down from 77...not noticed any difference from TSH at 180 100 or 77 so hoping great things will happen soon

  • You absolutely need TSH, fT3 and fT4 measured. fT3 and fT4 can give an idea if the TSH assay is correct. They can also indicate whether your have low or high hormone levels. In an earlier post you mentioned you had a fall. What sort of fall was this? Is it possible a problem around your pituitary precipitated the fall?

    In any event the endocrinologist should not have discharged you with this TSH. They have acted negligently. I would insist on an urgent TSH, fT3, fT4 assay and a referral to a competent endocrinologist. There has to be an explanation for this very high fluctuating TSH, especially as you were fine for so long.

  • jimh111 I had routine thyroid blood check came home with plan ready for work, fell backwards with no warning & skull hit the concrete recollection how I got into house had a seizure(witnessed by my 24yr old son) never had a seizure before admitted A&E for many stitches head wound, CT head totally normal repeat blood tests showed TSH of 100 the gp one first thing in an that day 180..spent night in hosp ward for head injury obs then 2weeks later awful appt with endo..I am at a loss as to what's going on😞

  • jimh111 do you know what could be causing me to feel worse now TSH 77 I surely should be feeling better now..when TSH 180 I was working full time & single mum to two gorgeous sons my 20year old son is palliative care I hold everything together and can't be ill which is why always rigorous in taking daily thyroxine

  • thyroidfairy, I don't know why you feel worse. Your strange TSH could be interference with the assay as diogenes suggests, your thyroid could be irratically packing up (not after 24 years???) or your pituitary could be misbehaving and pumping out TSH making you hyperthyroid. The fact that you had an unexplained fall with subsequent not feeling well and weird TSH results indicates that they should get off their backsides and find out what is happening ASAP. You have had a CT scan but I believe an MRI is used to investigate the pituitary, I could be wrong. I would ask for a second referral to a better endocrinologist as this one has been negligent in leaving you with what appears to be abnormal pituitary function. This could be affecting pituitary hormones other than TSH. Don't be alarmed, I'm just mentioning all possibilities so that you can get them to investigate. A first step is to measure your TSH, fT3, fT4 assuming the last two were not done by this 'endocrinologist'.

  • Was your routine blood test scheduled in advance or was there something that prompted you to have it? It's strange that you should get very high TSH and a fall on the day you go for the blood test.

  • jimh111 thanks for getting back to me, totally random that booked in for annual thyroxine which flagged up TSH & subsequent fall..I had no idea TSH was at this level until hosp let me know. I don't even call to get annual thyroid result & haven't for years as always normal

  • I'd ask for a copy of your previous results but it's more important at the moment that they check out your pituitary and the fall.

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